tamoxifin and endometrial cancer

trail2

Hi Ladies,  I have been on tamoxifen since July of 2011.  Haven't had a period since I stopped birth control pill right after BC dx in Jan 2011.  So after 1 yr 11 months of periods, I suddenly started having bleeding.  I am suffering from a sinus infection, and wondered if I coughed so hard I forced it out, but my oncologist said get to the gyn.  I went this morning for an ultrasound, and they found thickened uterus lining that wasnt there one year ago.  She did the edometrial biopsy today as well and said I might hear something monday, but may be wed because of the holiday.  Trying not to worry, but hoping it is nothing bad.  I am glad after reading what you all have been doing that I seem to be on the right track with the ultra sound and biopsy.  I guess I am in the waiting place for now. 

coraleliz

Trail-hope you get your results soon & that they are good(B9). When my endometrial biaopsy results came back B9, other tests were done. A polyp(s) was discovered. I had it removed along with a D&C a couple of days ago. Still waiting for the pathology report on that.

I have to say that this D&C was a cake walk compared to the ones I had following miscarriages. Can't believe how good I feel. I guess the emotional bagage that goes along with pregnancy loss is worse than the fear of endometrial cancer (for me amyway). I guess I rationalize it, that if it turns out to be endometrial cancer, it will be an early presentation & will mean I get a hysterectomy/ooph. At this point in my life I'm willing to give up those body parts.

trail2

Coraleliz,  thank for the update.  great to hear that you are doing well, and that the D&C wasn't too bad.  I called the nurse today just to see if by chance they had heard anything and asked a few questions.  She said my ultrasound a year ago measured the lining at .17 cm and when they did the ultrasound on Thurs, it measured 1.10 cm.  She said if the lab wasn't working on Monday that it may be Wednesday before I know anything.  I am hoping for good news, and trying not to be to anxious.  I agree with you about giving up body parts, especially since I am not planning on  needing them in the future !  Hope you continue to heal and get good reports .  Merry Christmas and Happy Holidays. 

kira66715

I had my third D&C on tamoxifen--I've been on it for 4 years and 8 months, and started with polyps--D&C in 2008, then grew a monster polyp--D&C 2011, and due to persistant bleeding my vigilant gyn did an endometrial biopsy which was negative, but she wanted to look more, so she did a hysterosonogram, which showed polyps, and I had my third D&C on Tuesday.

Yesterday, I checked the path, as I work in health care, and was SHOCKED to find: complex endometrial hyperplasia with atypia.

So was my gyn as no one had called her.

I have to have a hysterectomy as there's a high correlation with atypia and endometrial cancer, especially on tamoxifen.

I am stunned. Threw the tamoxifen in the trash.

The gyn oncologist who I was referred to can't see me for a month, so my onc made a second referral and I'm seeing her on Monday.

I was just being compliant, but after 3 D&C's, maybe the tamoxifen needed to be reconsidered, as its induced a second cancer.

I adore my gyn for being so vigilant.

I already have LE in my arm, and really hope there will be no node sampling.

Kira

Golden01

Good luck to you, Kira! Sending good wishes your way. You do have a good gyn. Glad you can get an appointment so soon. 

BetsyBuzz

Kira,

I had node sampling when I had my hysto as I had a positive biopsy prior to surgery for endometrial cancer.  I knew your name looked familar, it is from the LE board. I had both truncal and arm radiation induced LE. Unfortunately I also ended up with LE of the leg too. I'm sad to see you on this string.

I'm still on tamoxifen as I had such terrible bone pain while on chemo that I didn't want to even try the AI's. I was genetically tested after the 2nd cancer dx for Lynch syndrome. TG I was B9. I questioned my genetic counselor pretty directly and ask was my endometrial cancer related to tamoxifen, answer "yes". I am part of the .02%. Dang...I'd rather be part of the 99% group anyday.

I would definately speak very directly to your gyn onc about your LE. I had them target my left side if they needed extra sample as I used my right leg in my MLD.  Hence now I have LE just in my left leg. Strange Rt. arm, Rt chest, left leg all have been compromised. TG my arm and chest have improved.

I wish you luck.

Betsy

purple32

ENDOMETRIAL ABLATION
This is probably a very foolish question, but I do wonder.... would an endo ablation help any of you ladies in preventing issues ?

I am asking because I had the ablation myself  many yrs ago.  It would *seem* as though it might be a safeguard , but ...

Any info ?

kira66715

Betsy, thanks for your input. I've spoken directly to the gyn/onc who doesn't anticipate taking nodes, but wishes she could tell me 100% that none will be taken, although she's given me the right to refuse lymphadenectomy.

I did find three articles that suggest routine taking of nodes doesn't help and leads to LE:

Here's a Cochrane review: http://www.ncbi.nlm.nih.gov/pubmed/20091639

AUTHORS' CONCLUSIONS:

We found no evidence that lymphadenectomy decreases the risk of death or disease recurrence compared with no lymphadenectomy in women with presumed stage I disease. The evidence on serious adverse events suggests that women who receive lymphadenectomy are more likely to experience surgically related systemic morbidity or lymphoedema/lymphocyst formation.

But, I just read the NCCN guidelines and they DO strongly recommend pelvic lymphadenectomy for every single case of endometrial ca, even stage 1A. Scary

purple32

VERY scary , kira!

Best wishes  to you.

BetsyBuzz

My cancer was stage 1A. I plan to print the article and bring it to my GYN onc tomorrow. It's my three month check up post surgery. My surgeon said he had never had someone develop LE from surgery. Just my luck I would pave the way again!!!

Purple- My sister had an endometrial ablation and as part of it they did lab work on her cells. She ended up with stage 1 uterine cancer. TG they did a thorough testing otherwise she the outcome may have been very different. She ended up with a hysto. too. No chemo or rads.

Good luck Kira, I will keep you in my prayers.

BetsyBuzz

My cancer was stage 1A. I plan to print the article and bring it to my GYN onc tomorrow. It's my three month check up post surgery. My surgeon said he had never had someone develop LE from surgery. Just my luck I would pave the way again!!!

Purple- My sister had an endometrial ablation and as part of it they did lab work on her cells. She ended up with stage 1 uterine cancer. TG they did a thorough testing otherwise she the outcome may have been very different. She ended up with a hysto. too. No chemo or rads.

Good luck Kira, I will keep you in my prayers.

purple32

My sister had an endometrial ablation and as part of it they did lab work on her cells. She ended up with stage 1 uterine cancer

Wow- I never even realized they did the testing. Too bad about the DX but you are right...TG!
I will say that for someone who had ridiculously heavy periods for nine years, endo ablation was a peice of cake that stopped everything.  A great tool. My dr. had never done one before- I was the first.  Easy breezy. 

ktym

purple32, I looked into that, from what I could find and read the endometrial ablation doesn't change the risk of endometrial cancer, but does increase the risk of delayed diagnosis because you don't have the abnormal uterine bleeding which is usually an early warning sign that prompts the work up to look for the endometrial cancer.

Kira, So sorry you're going through this. 

Count me on the list of people who had abnormal uterine changes from Tamoxifen.  Not as bad as what Kira is going through, but, I had a hgh risk of going there so we stopped it.  The impression I always get from the medical oncologist is that this is unusual.  The impression I always get from the gynecologist is that they deal with this all of the time.

purple32

Thanks for that info kmmd. Guess it would have been too easy ...

kira66715

Wanted to post an update, and also, I went back on this thread, and I was the first post from 2011, when I had the 5 cm polyp after 3 years of tamoxifen: a red flag that was ignored.

I have declined lymphadenectomy, and my gyn/onc and gyn support my decision:

Wanted to post an update: I did a lot of research, and found that removing all the pelvic nodes for staging doesn't change management in early endometrial cancer, and found a great concensus article in ob/gyn literature that said for my pathology: complex hyperplasia with atypia, a "simple" hysterectomy with or without ovary removal is the proper procedure, NOT removing all the pelvic nodes to "stage" or intraoperatively if some cancer is found, as it's likely low grade.

So, I called my surgeon and she said "I completely agree with your decision to decline a lymphadenectomy" and also sent me an email of support.

I had told her that the stress of going into surgery not knowing what was going to be done, and the high likelihood that I'd get leg LE without any clinical benefit were driving my decision, and she agreed.

Saw my gyn who agrees as well. She says she'll be shocked if they find any cancer as she took out everything with the hysteroscope and myomectomy tool, and it was focal and just in the polyps.

So, not looking forward to the hysterectomy and they will take the ovaries as well, but now I know that my pelvic lymph nodes are not being removed.

And I think the NCCN guidelines are ridiculous, as they recommend staging ALL women no matter how low the grade, and then if for some reason they aren't staged, they just recommend observation for Stage 1A, grade 1-2. And higher grades, they recommend pelvic imaging for unstaged women. They acknowledge that the studies out of Europe show no clinical benefit from removing the pelvic nodes, but say it's still the North American standard to do so.

Betsy: here is the 2009 study in the Lancet that changed the approach in Europe, which the NCCN hasn't adopted

http://www.ncbi.nlm.nih.gov/pubmed/19070889

INTERPRETATION:

Our results show no evidence of benefit in terms of overall or recurrence-free survival for pelvic lymphadenectomy in women with early endometrial cancer. Pelvic lymphadenectomy cannot be recommended as routine procedure for therapeutic purposes outside of clinical trials.

purple32

I have declined lymphadenectomy, and my gyn/onc and gyn support my decision

Kira

I hope you rest easy with your decision. It was a well thought out and wise decision, anyone can see. It must be a  good feeling to know both DRS support you.

Thank you for posting the deatils here for anyone who may have  a similar situation now or in the future. I am sure it would prove helpful.

Good luck with your surgery.

kira66715

I hope no one else has this happen, but statistics say they will and I hope my research helps other women.

I treated women with endometrial cancer when I worked at the rad onc's, but never really looked at the articles before. Never thought I'd have to know....

purple32

Never thought I'd have to know....

ugh.  sorry

ali68

Hi, can anyone tell me if I should be worried. Been on Tamoxifen over a year and have bad SE. Had US on pelvis which was clear but then had Transvaal I think! Anyway my lining of the womb is thick so seeing an gynaecologist next week.

What should I ask?



Thanks Alison

kira66715

Alison, tamoxifen does stimulate the lining of the uterus, and acts like estrogen on it, so it can cause a thickened lining, which is a concern for precancerous changes. The usual next step on evaluating it is and endometrial biopsy, which is done in the office.



The quoted risk for endometrial cancer on tamoxifen is 1%, but the risk increases with longer exposure.



I found a study that said that women like me who formed endometrial polyps on tamoxifen were at higher risk.



I took it because I was premenopausal at 50 when I started it, and my hormones continued to show premenopausal although I'm almost 55 now. I had 4 months left before the 5 year mark.



I did have tamoxifen periods, and after a point my gyn felt that was a concern and called them post menopausal bleeding, and they did get weirdly heavy before the last D&C



I had 3 D&C s, first a few months into it, as I started with polyps, and in 2011 I had huge polyps, 5 cm, and then this last one because I was still bleeding.



I'd just ask how they intend to assess this and follow you



Good luck, and I'm the worse case scenario, although worse would be frank cancer, but I do think the risk is under stated and the onc's let the gyms take care of it, and my gyn wasn't going to tell me to stop adjuvant therapy, and I saw my onc literally the day before the D&C and she said to finish the last 4 months....

ali68

Kira, thanks for reply I did have tests before I had breast cancer because I was bleeding between periods. 3 months after that I got breast cancer, not had a period since chemo so not sure if I'm pre or post menopause.

One thing that really upsets me is the bloating, pain and weight gain. I would stop taking tamoxifen tomorrow but I'm high risk. Saying that no one says what % I am so how am I to know what to do.

kira66715

Ali, it's a risk/benefit situation--the benefit is lowering the breast cancer recurrence risk, which is the primary and most important goal.

And some women with chemopause can be on an AI, if they're really permanently post menopausal now.

Close monitoring by a gyn will catch precancerous changes in the uterus at the point where they can be treated and a hysterectomy is a total cure.

I was getting FSH and estradiol levels to monitor my pre/post menopausal status, and the FSH goes up and the estradiol goes down in menopause. But it can change if the ovaries make a recovery.

Sounds like your gyn should assess your pre/post menopausal status and keep an eye on the thickened endometrium, and your onc should weigh in with their opinion as well.

kira66715

Here's a free full article on endometrial pathology and adjuvant therapy: https://mail.google.com/mail/?account_id=judith_nudelman@brown.edu&shva=1#inbox/13e618fbb93b7b54

Notable quotes:

There was a significant correlation between the duration of TAM treatment and the severity of endometrial pathology.

TAM treatment is associated with an increased risk of developing endometrial cancer; the relative risk is estimated to be two- to six-fold (2,5,29) and this increases with the duration and the cumulative dose of therapy (3,8,10,29,30).

So, the 1% risk is really a summary statement, and the risk increases with the longer duration of therapy.

Ironically, the women who had no therapy had higher rates of cancer.

gonzard222

I have been on Tamoxifen since November 2012...just a few months in and I am already having a D&C done. Just had it this past friday so I havent got the results yet. My lining had grown quite a bit in just 4 months. I had a Transvaginal US done in December and I was normal. I am so not convinced of this tamoxifen. Is this going to be routine for the next 4 1/2 yrs on this? My gyno sent me to a gyno onco who suggested the d&c. He said he has never seen this in someone my age (38) this early on using the tamo....said he normally sees it after a couple of years...What?? He said many women opt for hysterectomy....told me to think about it....hmmmmm really?? I don't plan on having any kids but so sick of surgeries. Have had 6 surgeries since Sept 2012. I am so worried!

gonzard222

Oh and I have 2 large cysts on my right ovary as well....I have had serious low back pain as well.....just sick of all this!

ali68

So my back went again and in terrible pain, my lower back is horrible. Stopped Tamoxifen 3 days ago to have a break from it. My tummy is so bloated having to wear jogging bottoms as nothing fits. Can't carry on like this I'm so glad I have my apt today, I really am thinking never to go back on Tamoxifen it doesn't agree with me.

eine

I have been on tam for 4 years and 7 months...5 months to go.  I had a hysteroscopy Jan 2012 to remove a large uterine fibroid that was benign and was told to be aware that they will come back.  Yesterday I had my annual gyne and she found a "lesion" at the opening to my cervix, so she did a colposcopy and I am now undergoing another agonizing wait for the lab results which may not be here until Monday.  Nice Mother's Day.  Has anyone had any cervical "changes" that were related to tamoxifen?  My gyne thinks it's unrelated but I've read some research that suggests it could be all part of tamoxifen.  I want to throw the toxic tamoxifen in the trash too.  I am so sick of this and now I am considering a hysterectomy because I am going to die of anxiety first.

ali68

Have to go back next week to have an Hysteroscopy with local because it was too painful for me. Not sure how it takes to get results?

Eine, having to put up with that as well I would want a hysterectomy too.

ALittleBitBritish

I had cysts, two polyps and endo thickening possibly due to tamoxifen, had a D&C last March and now the two Gyn's dont want to do any kind of follow up!

No US and advised PAPs every 3 years....is it me or shouldn't I worry about taking a drug that has SE of cancer! Then I was told some wacko story of a patient having a pulmonary embolism on the OR table and the results were benign.....I am not asking for surgery for goodness sake, just a US to check nothing is growing.



That's my vent for the day!! I am considering stopping this tamoxifen...

kira66715

Had the hysterectomy on May 14, now waiting for the path

Still hard to believe tamoxifen caused precancerous changes and forced abdominal surgery, just hoping its all gone.

Glad to be home